Sunday, October 28, 2012

There are quite a few things I wanted to write about during this month of October - the Down syndrome awareness month. There are many things I would like for people to know, to understand, about Babe, about Down syndrome, and about Babe having Down syndrome. There are so many stereotypes and so much outdated and even completely and utterly wrong information about Down syndrome and people with Down syndrome out there that there aren't enough blogs or posts about it to almost even begin to make a dent. So I really should do my part, to better, and certainly more often, be that tiny stream of facts and tidbits flowing towards the great ocean of correct information.

But I've been living instead. Our little family of three has been enjoying life and our new surroundings of Seattle, Washington, learning to exist at sea level without needing to know where the oxygen tank is at all times and how much O2 is left in it, and buying rain gear and learning to wear socks (and not just in sandals) again. Babe has gotten to know Seattle Children's Hospital pretty well, I've managed to get Babe's Early Intervention services started, and Babe's been busy making new Danish, Finnish and American friends just by being her usual hollering (and I do believe she has discovered yet another level of loud) self. The Viking's been hard at work in his new and exciting position, and we've even bought a house. Well, almost, we're still on planet escrow (which really should have more wine on it, but I digress).

So while I have thought about Down syndrome, I've also thought about paint colors, rubber boots with houndstooth pattern on them, furnaces and air ducts, swing sets, doing yard work, finding a hair salon edgy enough for my needs, fall colored leaves, Starbucks, whether a Mexican Costco membership counts in the US (it does), lead paint, playgrounds, home inspections, Gymboree music classes, gutters, driving according to the rules of the road, and many more mundane and grand things.

Life.

That certainly does not revolve around Down syndrome.

So here they are, 21 quick facts everyone should know about Down syndrome, so that I can go back to looking at color charts and the new Land of Nod catalogue:

1. Down syndrome is not a syndrome. It is a genetic condition arising from having three copies of the 21st chromosome instead of the more common two copies.

2. Down syndrome occurs randomly at the frequency of around 1 in 691 births and is the most common genetic variant.

3. A person with just Down syndrome is healthy. Down syndrome is not an illness.

4. All people with Down syndrome are individuals with unique personalities and full emotional repertoires.

5. A person with Down syndrome is always a person first, not a Down syndrome child, a Down, or Down syndrome. They have Down syndrome.

6. Down syndrome is neither mild nor severe. Different individuals have different challenges and are equipped with different strengths and weaknesses.

7. A Down syndrome diagnosis is not a reason for condolences. Having Down syndrome is not cause for pity.

8. individuals with Down syndrome are capable and once they become adults they should be treated as such. People with Down syndrome do not stay children forever, nor are they like children as adults.

9. People with Down syndrome are not angels, special, or in any way 'sent here for a purpose'. Down syndrome is biology.

10. People with Down syndrome can date, have sex, marry, go to university, have jobs, pay taxes, break up, get drunk, divorce, make good and bad decisions, and learn (or not) from their mistakes.

11. A person with Down syndrome can be as perfect as the next person. Down syndrome does not equal 'less than'.

12. Down syndrome is not something to be fought, eradicated, or in need of an ass kicking, it is present in every single cell of the individual.

13. Bringing up a child with Down syndrome does not require special skills any more than bringing up a neurotypical child does.

14. Down syndrome is not an excuse for bad behavior and it is not a reason for allowances. Down syndrome in itself is not the cause of any kind of behavior.

15. Down syndrome does not make an individual ugly, nor does it make them beautiful. It doesn't make them anything.

16. People with Down syndrome are not "too stupid to understand" when they are ridiculed.

17. Individuals with Down syndrome can be valuable and productive members of their communities as long as they are expected and given the chance to contribute.

18. People with Down syndrome are not a burden on society unless they are made that by lack of fair opportunities and expectations.

19. Down syndrome is not a subject to be avoided. Questions are good, ignorance is bad.

20. Down syndrome is no joke, but it's not a sentence either.

21. A baby is a baby is a baby. A child is a child is a child. A person is a person is a person.

Life already comes with challenges, like Mittens, don't make it harder by being ignorant about Down syndrome.

Wednesday, October 17, 2012

That's the word most people (usually the ones who wish to be kind and compassionate) use to describe my daughter, to describe people with Down syndrome. That is the word most parents of kids with Down syndrome use to describe their child. There is a movement called 'more alike than different'. There are blogs and pamphlets filled with analogies that all draw from the idea that one measly chromosome in the complex, intricate medley that is a cell is a big enough divider to make a person different from 'the rest of us'.

Now, I have no problem with being different. I like difference in everything. I like unique. I like variety. I like change.

What I do have a huge honking problem with is the assumption that 'the rest of us' are all so much the same that we can become the sea of poppies in an especially annoying gardening analogy while a person with that extra chromosome becomes a daisy, or worse, a (albeit beautiful) weed.

Well, I'm no poppy, and my kid's no daisy. I'm not more alike with my neighbor than I am with my kid. My best friend's kid is not necessarily more like her than my kid is like me, just because of an extra chromosome.

We are all different. We are all unique. The extra chromosome should not divide between us and them, as shouldn't race, religion, gender, sexual preference, nationality, language, length of the middle finger, or internet search engine preference.

What is seen as disability in today's world seems to be the last accepted other (as popularized by Said), reminiscent of the previously accepted others - one's sexual preference preceded by the color of one's skin. During my studies of American slavery I remember reading pages and pages of descriptions of the 'negro', and the 'savage'. Ideas and generalizations I thought had been left in history, but which keep returning to me when ever I decide to read yet another 'description of Down syndrome'.

I'm not going to tell you that children with Down syndrome are beautiful. That would be like saying that all blonds are stupid, people with Down syndrome are always happy, or that Trekkies are all smart. All I'm saying is that my kid (with Down syndrome) is beautiful, and that I've met quite a few people with Down syndrome who are beautiful as well.

I do wish to show that my kid is beautiful, in case there is someone who thinks that just because she has Down syndrome beauty is somehow beyond her reach. But that's as far as I'll go.

Like snowflakes we are all unique, all different, and like snowflakes we are all the same. How's that for an annoying analogy?

This is my child, and she is beautiful.

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Bloghopping with Down wit Dat in May 2014 with an oldie but (an under-appreciated?) goodie post.

Saturday, October 6, 2012

The month of October now means more to me than any other month. "Is this because it is the official Down syndrome awareness month?" you might ask. And my answer would be that that's part of the reason. Of course. Naturally. I want to educate and advocate and make this world a better place for everyone, especially those with trisomy 21. For Babe.

This is the month that last year was looking unprecedentedly bleak and scary. I was in and out of the hospital and seemed to be spending way too much of my time chatting to ultrasound technicians when I clearly should have been googling the offered colors of a specific stroller to stop the Viking from acquiring a baby-blue one that the sales people in the store convinced him was 'grey' for our bundle.

But we didn't know if she was going to make it, so while I spent a lot of time on the internet as I was lying on our living-room couch, I wasn't looking at strollers, or figuring out how to make my own diapers, overdosing on pink cuteness, or looking into how to make the milk come once she was here, or filling out a registry for my Baby Shower.

I was reading up on rapid placental maturation, the point system they use to decipher level II fetal ultrasounds, the functions (and sudden failures) of fetal shunts, emergency c-section procedures vs. planned c-section procedures, and NICU stays. I was also desperately looking for others who had gone through what we were going through and come out in the other end with a little screaming infant in their arms, one adamant to stay on this earth.

Silently willing any good karma we ever had coming to becoming two of those people.

So that would make October Babe's birthday month. The month of 'the best thing that ever happened to I and the Viking'.

On Thursday babe is ONE. And we're still two of those people.

Yes, there have been health issues, there have been developmental delays, there have been illnesses and even big scares, but Babe's rising above all of that and making her unique personality, accompanied by a set of lungs that make you doubt she could have any issues with breathing, known to the world, especially that part unfortunate enough to reside directly next door or above our current lodgings.

The Babe hollers, smiles, laughs like Nelson from Simpsons when bounced just the right way, loves music and soap bubbles and dancing, babbles in a mixture of languages infused with one created by herself, throws stuff, blows raspberries, gnaws holes in things with her four teeth, expertly backs up her crawling track but refuses to move forward, and makes whoever comes into contact with her fall in love. Even with snot running down her top lip.

Simply by her loud and wide presence in the world she herself makes people aware that Down syndrome is nothing to feel sorry about. It's not a defect. It's not a hindrance. It's not less than perfect. It just is.

About Me

A child of a global world, originally from the land of Santa and cell phones, married to a bona fide viking, and attempting to raise a loud little life who has Down syndrome, all the while getting used to the US Pacific Northwest after many years in Latin America and Africa. Against all odds the kid's first words turned out to be 'mom' and 'book' instead of 'fuck' and 'no'. That may well turn out to have been my finest parenting moment ever.